Innovative Uses of Surveillance Data to Respond to the HIV Epidemic

1. Innovative Uses of Surveillance Data to Respond to the HIV Epidemic Amanda D. Castel, MD, MPH The George Washington University School of Public Health and Health Services

2. National Minority AIDS Council • Established in 1987, NMAC is the premier national organization dedicated to develop leadership in communities of color to END the HIV/AIDS epidemic. Program services: • Capacity Building Assistance (CBA) • Conferences and Meeting Services • Legislative and Public Affairs • Treatment, Education, Adherence, and Mobilization

3. Webinar Series Getting to Data Driven Outcomes Jan. 16 Innovative Uses of Surveillance Data for Nontraditional Purposes to End the Epidemic Feb. 20 Reducing Perinatal Transmission: An Illinois Perspective May 15 Pay for Performance in HIV Testing Services

4. Objectives • Understand how to assemble STD and HIV surveillance data to measure the effectiveness of HIV providers and grantees • Name at least three ways data triangulation can be used to evaluate HIV programmatic outcomes • Understand how quantitative data can be used to make programmatic decisions in this new HIV environment

5. Background and Historical Context

6. HIV/AIDS Surveillance . . . . . . is the ongoing and systematic collection, analysis, interpretation, dissemination and evaluation of population-based information about persons infected with HIV or diagnosed with AIDS (CDC)

7. History of CDC AIDS Case Definition for Surveillance in the U.S.* • 1981 –Reports of Pneumocystis carinii pneumonia (PCP) and Kaposi’s sarcoma (KS) in young gay men in SF, NY and LA • 1982 – CDC clinical AIDS case definition developed including 20 opportunistic illnesses, including infections (bacteria, fungi, protozoa) and cancers (KS and lymphoma) • 1987 – Case definition expanded to include TB, wasting syndrome, and dementia • 1993 – Expanded again to include cervical cancer, bacterial pneumonia, pulmonary TB, and HIV+, CD4<200 *www.thebody.com/encyclo/aids.html

8. Pathway of HIV Infection High risk behaviors HIV prevalence Advanced HIV/AIDS Death HIV incidence HIV Case Surveillance AIDS Case Surveillance Death Surveillance using vital registration data HIV Prevalence Estimates HIV Incidence Surveillance Molecular HIV Surveillance/VAHRS National HIV Behavioral Surveillance Morbidity and Monitoring Project

9. Importance of HIV/AIDS Surveillance • Describes the epidemiology and magnitude of the HIV/AIDS epidemic • Monitors trends in affected populations • Targets HIV prevention and treatment services • Guides the development of new interventions and approaches to HIV prevention • Provides data upon which funding decisions for HIV/AIDS programs (e.g. Ryan White) are based

10. Key Changes to HIV/AIDS Surveillance Systems • Integration of HIV and AIDS surveillance • Transition from code to name-based HIV (and AIDS) surveillance • Data capture is now longitudinal due to move from HARS to eHARS • Measurement of HIV continuum of care • Use of surveillance data to drive and measure the impact of programmatic and clinical outcomes

11. Measuring the HIV Continuum of Care: The Treatment Cascade 79% 62% 41% 36% 28% Using data from 3 different surveillance systems, able to measure engagement in care Source: MMWR Vital Signs, Dec. 2, 2011, Vol 60 (47).

12. Prevention and Testing

13. Missed Opportunities for HIV Testing • Objective: To provide evidence for missed opportunities for HIV testing in South Carolina • Methods: Linked surveillance registry with state-wide all payer health database • Looked for visits and diagnoses occurring before the 1st HIV positive test • Results: 73% of newly diagnosed persons had visited a health care facility >= 1 time prior to being HIV tested. Source: Duffus WA et al. AIDS Patient Care and STD, 2009.

14. Impact of South Carolina Study • Routine, voluntary HIV screening for all persons 13-64 in health care settings, not based on risk • Repeat HIV screening of persons with known risk at least annually • Opt-out HIV screening with the opportunity to ask questions and the option to decline

15. National HIV Behavioral Surveillance Project (NHBS) Heterosexual HIV Behavior Survey, 2010

16. National HIV Behavioral Surveillance Project (NHBS) Heterosexual and MSM Survey, 2006-2009

17. Social Marketing Being in a Relationship Isn’t Always Easy: Know Where You Stand

18. HIV Testing, Social Mobilization, Condoms and MSM in DC • Dissemination of media messages via billboards, METRO ads, and bus ads

19. Expansion of Municipal Condom Distribution, DC, 2007-2010

20. Data Triangulation • Triangulation is a method used to check and establish validity in studies by analyzing a research question from multiple perspectives. • Data triangulation involves using different sources of information in order to increase the validity of a study. • Triangulation has proved to be an effective tool for reviewing and corroborating findings in the surveys, assessments, appraisals, etc., that are an essential part of effective monitoring and evaluation Sources: www.unaids.org; Lisa Guion at https://edis.ifas.ufl.edu/fy394

21. Routine HIV Testing Scale-up in DC 2) Focus on Medical Settings: Ask for the Test Offer the Test 1) June 2006, Testing Campaign >50 Partners Rapid Test Expansion DC Jail • Preliminary Positive? • Go directly to HIV care

22. Impact of Routine Testing in Washington, DC 2005-2009 Source: Castel AD et al. CROI 2010 Presentation

23. The Impact of Community-Wide HIV Testing in NYC Source:Myers JE, Braunstein SL, Shepard CW, et al. JAIDS, 2012 Sep.

24. Syndemic Analyses and Co-Morbidities

25. Poll Question #1 Does your organization/health dept. have an integrated surveillance system?

26. Syndemics • Defined as two or more diseases, or conditions, that interact and increase transmission probability or worsen the health outcomes of people and communities • Can assess syndemics by linking and matching cases of from each disease registry

27. Syndemics in DC, 2010

28. Assessing the Role of Syndemics in San Francisco • Assessed the prevalence of co-occurring infections and their impact on persons living with HIV/AIDS (PLWHA) by matching 7 disease registries • Results: Syndemics highest among certain populations • Co-infected PLWHA affected diverse geographic areas, regardless of socioeconomic status • Conclusions: PH Impact: Underscores need to address multiple conditions in tandem in an integrated health system Source: Impact of syndemics on people living with HIV in San Francisco. P.L. Chu, G.-M. Santos, A. Vu et al. IAS Conference, 2012

29. HIV and non-Infectious Conditions: National HIV/AIDS Cancer Match Study Number of Cases Known vs. Unknown by Year of Cancer Diagnosis, 1996-2006 Cancer Type by HAART Era of Diagnosis ADCs

30. Linkage, Retention, Care, and Treatment

31. Measuring the HIV Continuum of Care Source: Linkage, retention, ART use and viral suppression in four large cities in the United States. N. Benbow, S. Scheer, A. Wohl et al. IAS Conference 2012.

32. Comprehensive Community Approach to HIV : The 4R’s • Recruitment • Health System Navigator • Red Carpet Entry • Recapture/Re-engagement • Blitz! • Retention • Acuity Scale & MCM Guidelines • Results • Linkages • Treatment Promotion 32

33. DC Recapture Blitz Purpose: To re-engage people living with HIV in care who are ‘loss to care’ Define: Loss to care: Not in care for more than 6 months Methods: Primary Medical Care Providers send list of clients not seen in their clinics for greater than 6 months. HAHSTA “matched” these lists to e-HARS, labs surveillance and ADAP databases.

34. Louisiana Public Health Information Exchange (LaPHIE) • LA surveillance data demonstrate that ~1/3 of HIV infected persons are not receiving HIV care • In 2007, the OPH partnered with LSU, the largest HIV care provider in the state • LaPHIE is a ‘secure bi-directional public health informatics application which links public health surveillance data with patient-level EMR data’. • LSU ER, primary care, specialty ambulatory care, and inpatient units participate in real-time Herwehe, J. et al. Implementation of an innovative, integrated electronic medical record (EMR) and public health information exchange for HIV/AIDS. J Am Med Inform Assoc 2012;19:448-452

35. LaPHIE • Between 2/1/09-1/31/11, LaPHIE processed registration messages for 488 patient encounters. • Identified 345 unduplicated, HIV-positive patients in need of treatment. • Of those identified, 82% had at least one CD4 or VL test during the study follow-up period. Herwehe, J. et al. Implementation of an innovative, integrated electronic medical record (EMR) and public health information exchange for HIV/AIDS. J Am Med Inform Assoc 2012;19:448-452

36. Development of a City-Wide Cohort of HIV-Infected Patients: The DC Cohort • Objective: to contribute to improving the quality of care and treatment of HIV-infected patients in DC • 12 participating sites with 10-15,000 patients • Prospective, multicenter longitudinal cohort • Collect socio-demographics, risk factors, treatments, diagnoses, lab and procedures from EMR and data abstraction • Data will be linked to DC DOH surveillance data to improve completeness and accuracy

37. Poll Question #2 Do laws or regulations exist in your jurisdiction prohibiting the sharing of data across surveillance programs?

38. Spatial and Social Determinants of Health

39. AIDSVu • Created by Emory University, CDC, and local/state surveillance and prevention bureaus • Interactive online maps illustrating the prevalence of HIV in the United States. • Maps can be filtered by race/ethnicity, sex and age, and social determinants of health, such as educational attainment and poverty • Visually explore the HIV epidemic alongside critical resources: • HIV testing center locations • HIV treatment center locations • NIH-Funded HIV Prevention & Vaccine Trials Sites

41. Comparing HIV Data with Social Determinants of Health HIV Prevalence Rates, 2009 % Living in Poverty, 2009

42. Gentrification and Impact on HIV Rates in DC • Definition of gentrification: The process of renewal and rebuilding accompanying the influx of middle class or affluent people into deteriorating areas that often displaces earlier usually poorer residents • Purpose: investigate the association between gentrification and HIV case density • Neighborhood level comparison of gentrification • Gentrification measure: normalized median household value adjusted for neighborhood population Source: Ahmed T. et al. Gentrification and its effects on HIV/AIDS rates in D.C. IAS Conference 2012.

43. Results Reported Case Density Gentrification Index by Neighborhood 2000 2010 • The correlation coefficient of r = 0.51 shows a significant positive association between gentrification and HIV rates (p< 0.05).Approximately 31% of the variation in neighborhood rates of HIV/AIDS in DC can be explained by gentrification and demographic shift alone. • Gentrification is a significant factor in explaining how HIV/AIDS rates vary by neighborhood. • Findings underscore the need to consider gentrification when using M&E to advise programmatic priorities to accurately how public health interventions affect new diagnoses. Source: Ahmed T. et al. Gentrification and its effects on HIV/AIDS rates in D.C. IAS Conference 2012.

44. National Responses: Programmatic and Research-Related Initiatives

45. What is Community Viral Load? • A population-based measure of the concentration of plasma HIV-1 RNA (viral load) in HIV-infected individuals • Represents the level of viremia in a community in a geographic area • Community viral load (CVL) is a potential biomarker for HIV transmission and quality of HIV care and treatment • Hypothesis: • By measuring CVL, can assess progress in treatment and therefore reductions in a community's level of viremia • Declining CVL should correlate with a reduction in incident cases • Recent studies have supported CVL as a means of measuring HIV incidence: (Vancouver, British Columbia, San Francisco) • CVL is being used as an outcome measure for: • National HIV/AIDS Strategy • Testing and Linkage to Care Plus Source: CDC CVL Guidance Document

46. Mean CVL and HIV Incidence, 2006-08 Overall Mean CVL: 23, 348 copies/ml Mean CVL & HIV-incidence p=0.3 Source: Das M. UCHAPS Presentation, June 2010.

47. Figure 2. Geographic Distribution of Mean and Total CVL by Census Tract, Ward, and SES Indicators, 2008 Areas with higher mean and total CVLs appear to correspond to those areas with the worst SES indicators. Source: Castel AD, Befus M, Willis S, et al, AIDS, 2012 Jan.

48. Impact of CVL • Useful marker for • Assessing HIV/AIDS epidemic trends • Measuring access and impact of care and treatment • Serving as indicators of the viral burden in the population • Geospatial and subgroup analyses may be useful for informing targeted interventions • Methodologies vary but CDC has attempted to standardize • Being used to evaluate prevention activities on a national-level

49. HIV Prevention Trials Network (HPTN) 065: TLC-Plus Study Purpose: To evaluate the feasibility of an enhanced community-level HIV test, link-to-care plus treat strategy in the U.S. Five components: I. Testing II. Linkage to care III. Viral suppression IV. Positive prevention V. Patient and provider survey Two intervention communities (NYC, DC) compared to 4 comparison communities (Houston, Phila, Chicago, Miami)

50. TLC+ Outcomes Measured Using Surveillance Data • HIV surveillance data utilized to determine: • Newly diagnosed HIV infections • Linkage to care within 3, 4-7,7-12 months • Continuous HIV care • Viral suppression (VL <400 copies/mL) • Compare FI vs. non-FI, intervention cities, and intervention vs. control cities